I think that there is a little, shall I call it a lull, in how I feel a few weeks after doing better. After the pain being so intense for a stretch of time, when it is rather quickly better I am so relieved! I feel a little giddy and anxious to do some things that I couldn't. Now, a few weeks later, reality settles in and I am straining against the limits, not appreciating the milder headache so much and just overall a little discouraged. I shouldn't be, but I am.
Hopefully the winter weather we are experiencing will disappear, the sun will start shining and my attitude will improve, not necessarily in that order!
Tuesday, March 29, 2011
Friday, March 25, 2011
Friday
I have decided to complete the application for Johns Hopkins and just see what they have to say. The doctor will review the application and medical records and either tell me that he can't help me or will call to schedule an appointment there.
I continue to do well. My headache is remaining mild and tolerable for the most part. I am very slowly gaining strength, I think. I am still quite exhausted by the end of the day even though I am taking it pretty easy every afternoon. I haven't tried to add any exercise yet because I am too tired by the end of the day yet. Hopefully that will improve and I can work on strengthening a bit. I know by about 9:00 I am heading to bed and sleep as if I am in a coma. :) No sleeping pills needed now!
I continue to do well. My headache is remaining mild and tolerable for the most part. I am very slowly gaining strength, I think. I am still quite exhausted by the end of the day even though I am taking it pretty easy every afternoon. I haven't tried to add any exercise yet because I am too tired by the end of the day yet. Hopefully that will improve and I can work on strengthening a bit. I know by about 9:00 I am heading to bed and sleep as if I am in a coma. :) No sleeping pills needed now!
Tuesday, March 22, 2011
Tuesday
I am a little discouraged that I haven't heard from the St Louis or Columbus doctors. It is hard to understand why doctors seem to be so unwilling to work on my case. I have always tried to be pleasant with those that I worked with and have generally not called a lot or made a pest of myself. In fact, the SF NS that was so rude to me had not heard from me for over a year. Having this rare problem is just difficult because I feel like I am on my own so much of the time.
Now I struggle with what to do. Should I continue working on finding another doctor to see if more can be done? Or should I just be content with where I am? If I need a shunt adjustment I will have to go to SF. I will NOT go there if the shunt needs to be replaced! At this point my Milwaukee doctor is willing to continue working with me on that if necessary and I do trust him. So I am kind of at a crossroad and just not sure where to turn. There is also the doctor at Johns Hopkins that I can pursue and I about have that paperwork about ready. I just haven't finished it because I don't know if it is worth going out there now. I really don't know if I can get better.
Now I struggle with what to do. Should I continue working on finding another doctor to see if more can be done? Or should I just be content with where I am? If I need a shunt adjustment I will have to go to SF. I will NOT go there if the shunt needs to be replaced! At this point my Milwaukee doctor is willing to continue working with me on that if necessary and I do trust him. So I am kind of at a crossroad and just not sure where to turn. There is also the doctor at Johns Hopkins that I can pursue and I about have that paperwork about ready. I just haven't finished it because I don't know if it is worth going out there now. I really don't know if I can get better.
Sunday, March 20, 2011
Sunday
A busy, busy weekend! I am again so thankful that my headache has stayed very tolerable! We had a birthday party for Kylie Friday night and three girls stayed overnight and then had a second birthday party for Riley and had one stay overnight. The girls were great and it was an easy party for me. Kyle was fabulous in doing most of the work with the boys. He took six little boys bowling for a couple hours and then they came home for cake and then they headed home.
Saturday evening we had a potluck at church and although I had layed down for a little while, shortly after getting there I hit "the wall" and was utterly exhausted. Tanner drove me home and I went to bed shortly after. I was still tired this morning but got a three hour nap this afternoon and am finally feeling like I am on top of things as I can be right now.
Not surprisingly, today my head has hurt a little more than it has since the "episode" ended. Not bad, but just a little more bothersome. I would imagine all the activity is probably at fault, and there was a low pressure system hitting today, too, which often does cause me some problems.
The Lord has blessed me and my family. What a joy to celebrate birthday's. I am thankful that I am still on this earth to celebrate these things. Kylie just got her drivers permit and I am thankful that I could see her joy. I am glad that I can still be a more active part in my families activities again. Sure, it isn't a cake walk, but perhaps I appreciate these small things more because I can't always do it.
Saturday evening we had a potluck at church and although I had layed down for a little while, shortly after getting there I hit "the wall" and was utterly exhausted. Tanner drove me home and I went to bed shortly after. I was still tired this morning but got a three hour nap this afternoon and am finally feeling like I am on top of things as I can be right now.
Not surprisingly, today my head has hurt a little more than it has since the "episode" ended. Not bad, but just a little more bothersome. I would imagine all the activity is probably at fault, and there was a low pressure system hitting today, too, which often does cause me some problems.
The Lord has blessed me and my family. What a joy to celebrate birthday's. I am thankful that I am still on this earth to celebrate these things. Kylie just got her drivers permit and I am thankful that I could see her joy. I am glad that I can still be a more active part in my families activities again. Sure, it isn't a cake walk, but perhaps I appreciate these small things more because I can't always do it.
Thursday, March 17, 2011
Thursday
It really is a blessing to not have much new to write about. I am thankful that I am staying about the same. The headache is very tolerable. Of course, I am not as strong as I was prior to this episode but that is coming along.
I had an interesting conversation the other day, though. I had my hair cut and as my beautician was looking at my hair right before cutting she noticed that I had lost a lot of hair. She said that when your body is under a lot of stress your hair can fall out. Interestingly, she could also see that a lot of new hair was just starting again. I know the headaches were pretty bad part of the three weeks, and even when they weren't terrible, they weren't great. It is amazing how the body reacts to pain. It reminds me of when I noticed about 3-4 months after the last hospital stay that my toenails had started growing. They didn't really grow at all for about two years. Kind of weird! I guess when I have a lot of pain, my body uses all of its energy just surviving so it stops the less important functions. :)
I had an interesting conversation the other day, though. I had my hair cut and as my beautician was looking at my hair right before cutting she noticed that I had lost a lot of hair. She said that when your body is under a lot of stress your hair can fall out. Interestingly, she could also see that a lot of new hair was just starting again. I know the headaches were pretty bad part of the three weeks, and even when they weren't terrible, they weren't great. It is amazing how the body reacts to pain. It reminds me of when I noticed about 3-4 months after the last hospital stay that my toenails had started growing. They didn't really grow at all for about two years. Kind of weird! I guess when I have a lot of pain, my body uses all of its energy just surviving so it stops the less important functions. :)
Tuesday, March 15, 2011
Tuesday
Another good day, although quite exhausting! Boy do I get tired again!
It really is quite amazing that I had the shunt adjusted. That day that I went into the ns office and he was terrible, as we were ready to walk out of the office he sarcastically said that he would humor me and adjust the shunt but it wouldn't help. I said to just forget it and we walked out. When we got to the car, my mom asked if I was sure that I didn't want to adjust it. I told her no. I couldn't deal with him again and I didn't think it would help. She started driving and asked if we could stop at a restaurant just to pull ourselves together. After sitting there a little while, she asked again and again I said no. She pushed me a little bit then, so I told her to call Kyle and I would go along with whatever they decided. I was so discouraged that I really didn't care. Kyle immediately agreed with mom so we went back. Then we waited in the waiting room for about an hour and I was nearly ready to just walk out because it was noisy and I really was feeling pretty rotten. Mom says that she wouldn't have let me walk out, though. :)
I am so thankful that she pushed me to do it! Otherwise I would have fought this headache indefinitely, trying drugs that wouldn't help. What a blessing!
It really is quite amazing that I had the shunt adjusted. That day that I went into the ns office and he was terrible, as we were ready to walk out of the office he sarcastically said that he would humor me and adjust the shunt but it wouldn't help. I said to just forget it and we walked out. When we got to the car, my mom asked if I was sure that I didn't want to adjust it. I told her no. I couldn't deal with him again and I didn't think it would help. She started driving and asked if we could stop at a restaurant just to pull ourselves together. After sitting there a little while, she asked again and again I said no. She pushed me a little bit then, so I told her to call Kyle and I would go along with whatever they decided. I was so discouraged that I really didn't care. Kyle immediately agreed with mom so we went back. Then we waited in the waiting room for about an hour and I was nearly ready to just walk out because it was noisy and I really was feeling pretty rotten. Mom says that she wouldn't have let me walk out, though. :)
I am so thankful that she pushed me to do it! Otherwise I would have fought this headache indefinitely, trying drugs that wouldn't help. What a blessing!
Monday, March 14, 2011
Monday
Happy birthday, Kylie! I can't believe my second child is 14 today!
I continue to do well. What a blessing to be able to worship in our new church building with my family and church family twice yesterday! When I got into the car with the rest of the family I told them that it is such a pleasure just to be going along with them to church. When I have the bad headaches, one of the tougher times is when the whole family leaves together to go to church without me.
My head is doing pretty well. The headache is mild again, which I appreciate. My ears still ring loudly all the time which is annoying, but normal for me. I have struggled a bit with my nerves settling down. It seems like they go a little crazy when I have the bad headaches and it is taking some time for them to settle. I think it has gottten better but it isn't entirely gone yet. Probably the most noticeable thing is that I become a little shaky if I do a little too much or have noise or commotion around me for a little too long.
It is very nice to be going back to work. I went in a couple hours a day last week and hope to continue extending that, although I am being very careful to not overdue it. I really don't need any steps backwards at this point.
I continue to do well. What a blessing to be able to worship in our new church building with my family and church family twice yesterday! When I got into the car with the rest of the family I told them that it is such a pleasure just to be going along with them to church. When I have the bad headaches, one of the tougher times is when the whole family leaves together to go to church without me.
My head is doing pretty well. The headache is mild again, which I appreciate. My ears still ring loudly all the time which is annoying, but normal for me. I have struggled a bit with my nerves settling down. It seems like they go a little crazy when I have the bad headaches and it is taking some time for them to settle. I think it has gottten better but it isn't entirely gone yet. Probably the most noticeable thing is that I become a little shaky if I do a little too much or have noise or commotion around me for a little too long.
It is very nice to be going back to work. I went in a couple hours a day last week and hope to continue extending that, although I am being very careful to not overdue it. I really don't need any steps backwards at this point.
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